I would like to share with you the message I brought to our MP's.
First and foremost, to all who attended, I appreciate you volunteering your precious time, for the work that you do and for your intent to take ACTION for those of us living with ALS.
I was diagnosed with ALS on September 19, 2013 at the age of 41.
At the time I was working for the Canadian Mental Health Association. I was an art therapist, facilitating groups for individuals with both a mental health and substance use disorder. One day, I took the afternoon off work for a medical appointment with a neurologist. I walked in, had an EMG, and walked out with 2-3 years left to live.
This is my 5th year living with ALS.
I am very lucky to have the support of friends and family. It is difficult speaking with my father here today. Obviously he is suffering and would do anything to take away my ALS. But the reality is that this has been our conversation on a daily basis for the past 5 years.
There is not a moment that goes by that I do not think of ALS. It has stolen my future, my sense of adventure, and independence. ALS has brought anxiety, depression and every day I discover a new symptom of progression taking away any and all control I have over my life.
I had to leave a job I was very proud of, I lost the ability to drive, to walk, and to shampoo my own hair.
I still consider myself to be young! 10% of individuals living with ALS live longer than 10 years. But instead of feeling hopeful, that terrifies me as I live in fear of the time when I will become trapped in my own body, unable to move, yet fully aware of what is happening around me. I would prefer a quick death, or for my progression to halt where it is now, or even better, a cure.
ALS is more common than you might think. The incidence of sporadic ALS shows little variation in the western countries with an estimated lifetime risk of 1 in 400 (NIH).
The reason there are a relatively small number of Canadians living with ALS at a time is because of its devastation and how quickly it kills.
The federal government has a duty to protect the lives of Canadians. Whenever there is a global or national event where Canadians are killed, the country is outraged and our goverment does whatever it can to prevent the event from happening again, spending funds on investigations and inquiry. Where is that same resolve when the killer ALS kills thousands of Canadians every year?
I have never been as hopeful since being diagnosed with ALS as with the passing of Motion 105. One year ago M-105 passed unanimously to support research and implement a national strategy to eradicate ALS at the earliest opportunity.
I speak with many people from the ALS community through social media, clinic visits and fundraising events. Many of us literally had the wind knocked out of us with the passing of the Federal Budget. What we saw was $0 in dedicated funding for ALS. We did see the spending in neuroscience, and while that may help bring some new discoveries, there is no guarantee that any of those dollars will target new research into ALS. Was that not the earliest opportunity? Where is the action?
I would like to thank all MP's (and of course their staff) who attend the ALS caucus, and who advocate on our behalf to the Federal Government. Thank you to Francis Drouin the chair of the ALS caucus, for your character and your determination on our behalf to help in a variety of issues that affect Canadians living with ALS. Thank you Marc Serré and Judy Sgro for your ideas and dedication to our cause.
Also a huge thank you to Kevin Bosch the Vice-President of Hill+Knowlton Strategies for your excellent tour including introductions!